Photo: Multilingual speech therapist Camila Guerrero was a candidate for brain surgery for her epilepsy condition. (Photo courtesy of Camila Guerrero)
A young woman’s operating room drama highlights state-of-the art epilepsy treatment at UCLA Health
“It was pretty unique in my career to have the patient give the final consent in the operating room,” says Itzhak Fried, MD, PhD, professor and Director of the Adult Epilepsy Surgery Program in UCLA’s Department of Neurosurgery.
Clearly, this wasn’t a typical epilepsy surgery.
The patient, Camila Guerrero, then 32, lay on an operating table at Ronald Reagan UCLA Medical Center, her brain exposed, surrounded by a team of more than a dozen medical professionals including neurologists, neuropsychologists, imaging technicians and a specially trained anesthesiologist. Standing by were a Spanish interpreter and a Portuguese interpreter.
Leading the team were Dr. Fried and Dawn Eliashiv, MD, a professor and co-director of the UCLA Health Seizure Disorder Center.
Dr. Fried had just performed awake craniotomy language mapping, a state-of-the-art procedure in which the patient, while under general anesthesia, is awakened during surgery and tested for language performance using electrical stimulation. Commonly used language-related tasks include naming objects, understanding sentences and reading.
But this situation was anything but common — Guerrero was performing the tasks in three languages.
Moreover, she was a speech therapist and language abilities were at the core of her professional life. Throughout the mapping Dr. Fried was applying gentle electrical currents to the surface of her brain. He noticed that in many sites, once electrical stimulation was applied, Guerrero would have difficulties with speech fluency or naming of objects presented on flash cards in one language or another. This meant that removing these areas could entail significant compromise of her language abilities.
A decision had to be reached now, so Guerrero was asked how she wanted the team to proceed. Her choices: Undergo a resection to remove the small part of her brain causing her seizures — which carried the risk of impairing her multilingual abilities — or be implanted with a newly approved responsive neurostimulator (RNS) device: in essence a brain pacemaker that had shown promise in reducing the frequency of seizures.
As tensions ran high, Dr. Eliashiv took Guerrero’s hand, gently encouraging her.
“I remember crying on the table, saying, ‘I’m not sure. I don’t know anymore,’” Guerrero says. “Dr. Eliashiv said, ‘Well, what’s important to you?’ I remember yelling out loud, saying ‘I love my job!’ and Dr. Eliashiv said, ‘OK, I know what it is you want.’”
A history of seizures
Guerrero, now 36, began having nighttime seizures when she was 9 years old. They would occur just as she entered the REM (rapid eye movement) stage of sleep, causing the right side of her body to convulse. The seizures continued throughout her childhood while a variety of doctors tried to figure out which medicines and at what dosages would control them.
Although her life didn’t revolve around her seizures, Guerrero says, they were part of it.
“I’m a very positive person, so I didn’t ever look at the seizures as a limiting factor but something I had to work with and deal with,” Guerrero says. “As I grew up, I was lucky because my parents were supportive and they tried to make everything as streamlined as possible. Reflecting back, I realize situations that made me uncomfortable were due to the side effects of medications that I would take.”
Guerrero’s friends often referred to her as “clumsy,” but she says she now realizes that her difficulty with balance had to do with the changes in medications and dosages. She fell asleep easily, and waking up was often harder than it was for most people.
Guerrero did well at school, but had to work harder than others to achieve the same results, she says. “You go through your life and wonder why some things are a lot harder; the process of learning required so much more repetition and focus than my peers. Often times new skills and content were more difficult to remember and understand.”
It wasn’t until she began studying for her bachelor’s degree in linguistics at UCLA and her master’s degree in communication sciences and disorders at Cal State Fullerton that she realized the medication prescribed to control her seizures was affecting her cognition.
Things changed dramatically in 2015 when Guerrero, who by then was working as a speech-language pathologist for a rehabilitation center, began experiencing auras that sometimes accompany epilepsy. The aura is generally the first part of a focal seizure before consciousness is impaired. It can manifest as visual changes such as seeing bright or flashing lights, or it can present as hearing voices, a buzzing or a ringing sound. It can also generate a feeling of déjà vu or panic, an unpleasant smell or taste, or rapid emotional changes.
“I didn’t necessarily have a seizure, but I knew it could happen,” Guerrero says. “That scared me because I was awake, and that hadn’t happened to me before. I knew that it also meant that the medication dosage I was prescribed was no longer controlling my seizures.”
Guerrero began searching for a solution and came upon the UCLA Health Seizure Disorder Center.
Focal epilepsies are characterized by seizures arising from a specific part, or lobe, of the brain. In Guerrero’s case, a noninvasive magnetoencephalography (MEG) scan showed the epilepsy was confined to the left frontal peripheral lobe of the brain, close to the area controlling motor movement on the right side of the body and close to the area controlling language.
Further tests showed that she could be a candidate for resection surgery to remove a small portion of the brain causing her seizures.
In January 2016, Guerrero began a two-stage operation. The first surgery was a craniotomy, in which the skull was opened to insert a subdural grid and electrodes for brain mapping. From there, she spent four days in UCLA’s epilepsy monitoring unit.
The second surgery, in which the team would attempt a resection, would prove to be more challenging given the location of Guerrero’s epilepsy and her desire to keep her language fluency intact.
“Already during that monitoring we understood that this is going to be particularly difficult,” Dr. Fried explains. “I had a long discussion with her prior to the final surgery. Although it was clear to me that she understood where we were, the final decision was really going to be in the OR, because there we have the exposed brain right in front of us, and we can actually test her with electrical stimulation and we have immediate feedback.”
Once inside Guerrero’s brain, Dr. Fried saw he had little margin for error.
“We’ve got three languages on our hands, and I know from experience that the mapping of different languages is not necessarily overlapping,” Dr. Fried says. “I saw that it really left me very little room to work there in terms of what I could do. When she was awake, I said, ‘Camila, we can try to remove some, but we feel we have a risk of having a language issue.’”
In the end, Guerrero chose the neurostimulator implant. “We had talked already about pros and cons,” she says. “I just didn’t want to have to go through anything anymore. There was so much fear in resection but also in putting in a device that may not work. It was a hard decision for me to make.”
The NeuroPace RNS System was given FDA approval in 2013. Similar to a pacemaker that monitors and responds to heart rhythms, the RNS system monitors and responds to brain activity to prevent seizures. It consists of a small, implantable neurostimulator connected to tiny wires placed on the seizure onset areas. The device detects seizure activity and responds by applying electrical pulses to stop the activity.
UCLA Health has become one of the leading hospital systems in RNS implants, with more than 100 performed since 2013.
“What’s nice was Camila was one of the patients that really responded well,” Dr. Eliashiv says. “Usually there’s a 75% reduction of seizures after seven years, but she actually became seizure-free.”
The implant took place in September 2016. The following year, Guerrero got married to her fiancé Lonnie. They have a five-month-old daughter, Leah Isabela.
“I love children, and I’d always wanted to have kids,” Guerrero says. “Being able to feel comfortable and secure in knowing that you can follow through with that was an unexpected dream come true. The guidance of Dr. Eliashiv more than anything really helped me feel comfortable moving forward and having a child.”
Four years post-surgery, Guerrero still works as a speech-language pathologist and says her experience with epilepsy surgery has helped her empathize with her patients more fully.
“I’m able to understand the feelings and emotions they go through during recovery and it allows me to provide therapy for them in a much more effective way,” she says. “Having the consideration for not only changes in what they’re able to do, but also the emotional aspect of it, I’m better able to help them reach their goals and improve their quality of life when they go home.”
Jennifer Karmarkar is the author of this article.